Tag Archives: stage iv

Please Note: I still owe you an update of my next medical steps – coming soon! Until then let me close out this phase with the great Team Bruckner.

Back in June 2014 I posted about Joining Team Bruckner. I have made subsequent posts about the experience on the Livingly Dying blog. I completed a total of 13 treatments, each two weeks apart and all requiring out of state travel because I could not find an Oregon oncologist to provide the treatment.

I traveled to the Bruckner Oncology clinic in NYC four times and completed an additional 9 treatments in California under their guidance. As I take a break from the protocol it seems a good time for a summary update.

Bruckner Oncology is where many patients go when their oncologists say, “There is nothing more we can offer you.” Some patients, like me, start earlier in the process usually motivated by a cancer crisis. Over the last three years the docs at Bruckner Oncology have increasingly wrapped their big brains and huge hearts around recurrent ovca (ovarian cancer) because they like to focus on the cancers that stay especially deadly.

The partnership between the elder Dr. Bruckner and the younger Dr. Hirschfeld is a thing of beauty allowing every patient access to their best collegial thinking. I have worked with oncological teams in four different settings beyond Bruckner Oncology. I have had few complaints. My teams were caring and solid. I accepted the extremely limited contact with my actual doc. Nurse intermediaries represented me between the 15-minute visits with my oncologist. It worked but rarely felt like it encouraged dynamic problem solving.

To arrive at Bruckner Oncology is to leave that tiered system behind. Yes, there are PA (physicians assistants) and receptionists but they are a bridge not a barrier to your bountiful time with the doctors themselves. I can email or call my doctors directly at any point and expect a sprightly response – even when one is in Europe and the other had a baby late the night prior.

It’s a people’s clinic. No one is turned away. Every problem has an answer and they just don’t stop trying creative possibilities. Saying that, patients still die there. Recurrent, late stage cancer is not an easy to tame dilemma. They keep people alive for longer and have bragging rights on some amazing cases headed for hospice and now in their third year of remission with pancreatic cancer and more.

Their starting cocktail, adapted as needed, is built on the idea that lower doses of compatible chemos allow more impact with less damage and less development of resistance. But like any toxic cocktail it can’t be used forever. They start with that cocktail, continue through a post remission period and then tinker from there. Actually, they tinker throughout. That is why the level of contact between the doctor and patient is so high; they really need to KNOW how we are doing. They order a more comprehensive set of labs than most of us are used to. They listen, they look, they wonder. Throughout the infusion, they roam the room on a regular basis. And their interaction with the PAs and nurses is collegial and constant. There is a lot of respect being shared. (It also seems like staff love their jobs.)

What you don’t find there is a moneyed spa. The people’s clinic is crammed elbow to elbow. The nurses had better be damn good because a lot of the triple checks of other places are replaced with high competency expected of the primary nurses. They deliver. Visitors are often made to wait elsewhere or left standing for hours on end. It is crowded when your policy is to accept everyone. My husband noted, “It’s a bit like getting your chemo in a bus station.”

The front desk is understaffed. They can require multiple checks on every request but you see how much they are handling and so you partner with greater grace than you might at an overstaffed office, where systems are ironically often too staffed to work well. Here the problem is the opposite.

The treatment is Medicare covered. They do use creative, proven approaches like iv vitamin c that is yet to be paid for by any standard insurer but they are quick to advise you of out of pocket costs before you incur them.

The location of the clinic is in the Bronx, which is easy to get to if you are comfortable with public transportation. NYC is a Mecca for being able to get everywhere on little money. The American Cancer Society offers free lodging at Hope Lodge in midtown Manhattan – and an express bus available 5 blocks away goes to two blocks from the clinic.

There is no question that travelling to treatment is a challenge. I traveled cross-country and hated it. And it is expensive! I transitioned to a clinic in N California for treatments – still a slog but staying in the same time zone helps. I continue to seek a local provider but as I document on my blog that is not easy to do in our current medical industrial climate.

If you want more options I recommend that you flag this clinic for a time in your treatment when you don’t like what your local team is offering up. I started at Bruckner Oncology when my cancer surged from no evidence of disease (NED) status to being measured 45 days later in inoperable inches. Now I transition to a Phase One clinical trial knowing that in my six months of care with Bruckner Oncology, they disappeared my high volume of cancer. I transition because my cancer is starting to break through the cocktail and my body seeks a chemo break. I have no doubt that I will return to Bruckner Oncology again in this cancer journey.

My best friend in cancer world is a woman named Kim. I met her several years ago at the clinic where we both get complimentary care to enhance our ability to survive our vicious treatment regimes. She was so young, so pretty, so caring towards others; and so bald. I wanted to encourage her. Then she showed up with dramatic weight loss, leaning on others to walk, even her huge smile was dimmed. I approached her husband when she was in treatment, giving him my contact information, “if I could be of help”. He gave a resounding “yes” and so we went out to coffee that day. Kim, it turns out, had just learned that her lung cancer that she felt confident in defeating at stage 3c, was actually stage 4. She was crushed with what that meant.

With brief daily exchanges, we track each others relative positioning – are we needed or are we both set to make it through another day with metastasized cancer colonizing our bodies. While monitoring each other we have fun. Perhaps the best part of our relationship is that we never need to explain.

But Kim is good at explaining. I think many of us wonder, “What the hell do other people do all day?” Well, here is a glimpse at one day in the life of someone staring at mortality all day, every day. Kim used to be a top athlete; now her triathlons are all with the medical system – our shared new norm. warmly, marcy

I worked on a little project for the organization Caring Ambassadors. I was asked to write about daily life with lung cancer. This is what I came up with:

Living with Lung Cancer is no easy task. It is difficult to decipher which is more difficult the physical challenges or the mental challenges. I’ve been asked to comment on what it is like each day living with my terminal disease. Honestly, I feel my life is better summarized on a monthly basis. Each day can vary greatly. Is it a doctor appointment day? Scan day? Day before a doctor appointment day? A day of total rest and relaxation? A day that the thought of me dying before age 40 leaves me immobilized, weeping in bed, and tightly grasping a heating pad? In a month’s time I go through all of these typical days, and then some.

I will run you through a Wednesday of mine. This particular Wednesday is a scan day, the day my cancer is checked up on to see if it is shrinking, staying the same, or growing. The morning looks like any other morning. I wake up before 8 am to the smell of brewed coffee. I have a cup while I make a morning protein smoothie. For the most part, I eat a very consistent diet in hopes to eliminate GI issues, that are often a problem. As a former morning person I say my AM’s are slow. After smoothie is made I plop myself back down into bed, with my computer, and 2 bottles of pills. Fist down is the anti-nausea pill; 30 minutes later is my daily targeted chemo pill. Once I feel like my stomach has settled, at least one hour after anti-nausea pill, I begin to prepare for my day. I dress head to toe in cotton, give myself my daily blood thinner shot, and pack a light daypack. Today I will perform my new version of a triathlon. I am going to have scans, blood work, and EKG. I’m even going to add a quick stop at the pharmacy for good measure. I arrive on time for a 10:00 am check in for scans. The first is the quick CT of my lungs and abdomen. Thankfully the needle went in trouble free and my blood work was able to be drawn from the same injection point. Next is the brain MRI. This image is peskier clocking in at 45 minutes. Once scans are complete I venture up a few floors to get my EKG. I did not get a latte before my EKG this time; I know it will show an abnormally slow heart rate because of that and a side effect of my targeted therapy. Oh well. After 2-hours of actual doing things at my care center and 2-hours of wait time, my only stop left is a quickie at the pharmacy. I need to exchange my full sharps container from my daily blood thinner shots for an empty one. Finally I am ready to leave.

I make it home without too much frustration after navigating the parking lot. I’m hungry and need to eat before nausea kicks in. I eat a nice salad and drink some herbal tea. Nap time it is. Me, laptop, and cat are ready for our afternoon snuggles.

Tomorrow I’ll be getting the results of my scans. I can’t help but begin thinking about it now. Finally, I am able to catch my required 2-hour nap. This short snooze gives me the boost I need to visit with my my sweetie when he gets home from work. We’ll chat briefly, then decide where to go out for dinner. It’s a night to celebrate and all my running around has left me unable to spend a drop of energy on what to make for dinner. The sweetie could do it, but it’s best to use his energy for meal prep when I’m ill and require his assistance.

Since the blood work was already taken earlier, I can drink wine and not fear that my liver counts will reflect poorly after such indulgence. After returning home from a great meal with meaningful conversation, we’ll end the night with an easy 8-block walk. Now, I am ready for bed. I’m dressed in bedclothes and preparing my evening drug doses. I’ve learned the hard way to take them when I still have food in my stomach. Anti-nausea pill down, anti-depressant down; 30 minutes later targeted chemo down. I’m now officially ready for bed. Or, better put, ready to lay in bed and think of all the possible outcomes of today’s scans. I suspect sleeping will be difficult; within reach is my iPod with several meditation tracks at the ready.

It is Thanksgiving Holiday week – a ritual of gratitude for many in this culture. The wind howls, the rain (& snow!) falls, the last of the leaves can see their fate. I am excited for winter. These days I am excited for anything that I get to be here for.

Right now I hope to be around for a lot. My body feels good most of the time. The first look-see since diagnosis showed that the chemo had done a valiant job. My cancer had not grown and much of it had shrunk. (Of course what I really wanted to hear was the radiologist’s declaration of NED – no evidence of disease. While you can get that with an advanced cancer diagnosis, it is a little bit of smoke and mirrors. The very definition of Stage IV is the cancer lurks. But my disease is stable.)

And so it is party time. For those who can travel in ROP is hosting a party on December 4th, 2010 unlike anything we have done before. For starters, it is downtown – oh my! (Regrets to all of us who fret the driving but some times things just happen that way.) We have friends flying in that meant so much to the founding of ROP. And hopefully many of you can be there as well!

Why this party? We gather to celebrate the wonder of transitions keeping things very much alive. Cara Shufelt, long time organizing soul mate and dear friend of mine, returned to ROP as I stepped off to my fellowship year with the intent of continuing a long term focus in rural counties outside of Oregon. Her return was not about my health but rather a shared vision.

My health did waylay my plans. My health, though, has not waylaid ROP or Cara. This makes me so happy. So Saturday night, December 4th the ROP community gets to celebrate continuity, new directions, vibrancy, and the thoughtful cycles that define life as I formally retire. Much love, marcy

Roots & Wings Celebration * Saturday, December 4th * Portland, Oregon

5:30: Roots & Wings Celebration A joyful look back at where ROP comes from and where we are heading honoring ROP Founder Marcy Westerling, new Director Cara Shufelt, and the growing community of rural leaders at the heart and soul of ROP.

1pm: Community and Resilience in the Face of the Right An interactive afternoon with national movement leaders and organizers from the NW asking what we can and must do to expand our movement for justice and counter the resurgence of the Right.